A growing national charity that provides “special days” for seriously ill young adults has excessive – and increasing – fundraising costs.

The Willow Foundation (registered charity number: 1106746) was founded in 1999 by former professional footballer and TV presenter Bob Wilson and wife Megs in honour of daughter Anna, who died of cancer the year before. The couple are now life presidents. The charity has tens of celebrity supporters, or ambassadors, as the website calls them.

“In the last five years alone the number of special days has grown by 65%,” trumpets the latest trustees’ annual report (TAR) and accounts, made up to 31 December 2016. So in 2012 there were 775 special days, and 1279 last year. The number increased year-on-year as well over the last five years. Impressive growth. What happened, though, to Willow’s income and fundraising costs over the same period? (Table 1)

Table 1. Willow Foundation 2012-2016 (GBP m)

Year

Income

Fundraising costs

Number of special days

2012

2.11

1.06 (50%)

775

2013

2.32

1.21 (52%)

842

2014

2.79

1.55 (55%)

981

2015

3.37

2.30 (68%)

1029

2016

4.29

2.97 (69%)

1279

Income first. Increasing year-on-year, too, it more than doubled between 2012 and 2016: from £2.11m to £4.29m. In other words, income rose faster than special days.

So why hasn’t the charity actually provided more special days? Well, there’s a clue in the fundraising costs. Again increasing year-on-year, these nearly trebled between 2012 and 2016: from £1.06m to £2.97m. Fundraising costs, then, shot up even faster than income.

But it’s not as if fundraising costs were low in 2012. That year at £1.06m they represented 50% of income (£2.11m), a high proportion already. And again this proportion has only ratcheted up year-on-year. Astonishingly, for each of the last two years, 2015 and 2016, almost 70% of funds raised in the name of seriously ill young adults have been swallowed up as fundraising costs. That’s right, almost 70%.

Willow justified the 2015 jump in fundraising costs as a boost to investment, saying in that year’s TAR it would enable “a planned major growth of charitable activity over the subsequent three years.” The charity thus created the impression the 2015 jump would be a one-off, “to prepare for long-term growth.” So it’s disappointing fundraising costs in fact ticked up in 2016. Last year’s TAR fails to address this directly, though, only identifying the “substantial” increase in event fundraising costs: from £0.49m in 2015 to £1.14m. This upsurge, it writes, was due to “a larger number” of events than the year before. But what the charity fails to say is the 2016 events clearly didn’t raise as much as hoped.

In fact, the latest TAR implicitly acknowledges this: in 2017, the charity plans “to further lessen our reliance on events income which will help to improve Willow’s overall return on fundraising investment.” But note the “further”: the same TAR told us there’d been more events in 2016 than the previous year!

It’s instructive to compare fundraising costs at a national charity with a similar business model, Make-A-Wish Foundation UK (registered charity number: 295672). Make-A-Wish UK grants “wishes” to “children and young people” with life-threatening illnesses. For four of the last five years, its fundraising costs have been around 30% of income (Table 2). In 2016, there was an increase to 40% of income. Yet nothing like the figures at Willow.

Table 2. Make-A-Wish Foundation UK 2012-2016 (GBP m)

Year

Income

Fundraising costs

Number of wishes

2012

6.29

1.78 (28%)

916

2013

6.40

1.87 (29%)

893

2014

7.44

2.00 (27%)

872

2015

9.94

2.94 (30%)

855

2016

7.03

2.87 (40%)

984

This year Willow “hopes” to provide 1400 special days, according to the 2016 TAR. A laudable aim. Nevertheless fundraising costs of almost 70% of income are self-evidently excessive. Regardless of the exact number of special days, Willow must surely drive down fundraising costs, if it’s to retain public trust and confidence.

Willow hasn’t responded to a request for comment at date of publication.

To coincide with 2017 World Menopause Day, charity the British Menopause Society (BMS; registered charity number: 1015144) today released the results of an online survey it commissioned on UK women’s experiences of the menopause. “The findings reveal the need for greater support for women experiencing the menopause across the UK,” claims BMS. Here’s the press release, which shows the charity again used PR company Edelman: EMBARGOED-UNTIL-18-OCT-2017-00.01_BMS-Survey-Results-2017_Press-Release.

BMS used Edelman for last year’s national PR campaign organised around a 2015 survey (see 17 July 2017 post). There I revealed who actually funded the previous PR campaign – three pharmaceutical companies: Novo Nordisk, Mylan and Pharmacare. Prior to my investigation, BMS hadn’t disclosed the funding sources.

As today’s press release shows, the charity has again failed to be transparent about who’s funded its PR campaign. It says nothing about funding. Disappointing, but predictable.

In Allison Pearson’s new novel, “How Hard Can It Be?”, Kate Reddy is back, now dealing with the menopause. The bestselling author devotes a paragraph in the acknowledgements to Dr Louise Newson, “an expert in hormone replacement therapy” (HRT). HRT is the main treatment for menopause. On 17 September 2017, Dr Newson gushed on Twitter: “This book [“How Hard Can It Be?”] is so enlightening and truthful about the menopause – I have so enjoyed helping @allisonpearson with it!” Later that day the GP and menopause expert re-tweeted Ms Pearson’s response: “You were so helpful. Gave me great confidence that what I was writing was true!” Yes, but Ms Pearson and her readers should be aware: Dr Newson is paid to promote HRT and other menopause-related products and services – but doesn’t always disclose her commercial relationships with the relevant companies.

Ms Pearson and Dr Newson‘s mutual admiration continued in The Daily Telegraph newspaper, where the novelist is a columnist. On 2 October 2017, Dr Newson published an article again banging the drum for HRT, “Women need HRT, not antidepressants.” Again, the menopause expert was full of praise for “How Hard Can It Be?” and its author.There was even a plug at the end, proclaiming the book is available via The Telegraph website.

There‘s no suggestion Ms Pearson has been paid or received other material benefit to promotemenopause-related products and services in her new book, which was published on 21 September 2017.

True, Dr Newson declares her financial interests in a file on her website. But she only published the file after I contacted her to query the absence of the information on her site in relation to a particular company (see below). Also, the disclosures there are inadequate. Particularly concerning, though, is her non-disclosure when quoted as a seemingly independent expert in editorial articles in newspapersand on websites – or as author herself of such pieces. Here I discuss two examples. In the first, Dr Newson‘s promotionalactivities around menopause-related vaginal dryness and a new laser treatment, MonaLisa Touch (MLT). Then her work with US drug company Mylan, a major HRT manufacturer.In quotes for a recentnational Sunday newspaper article, for instance, Dr Newson praised a new supposedly independent menopause website forthe public – but failed to say Mylan was responsible for it.She didn’t reveal her commercial relationship with the drug firm, either.

On 4 July 2017, Dr Newson published on her website, menopausedoctor.co.uk, an article by Jane Lewis on vaginal dryness. There Ms Lewis enthuses about treatment MLT. There’s two paragraphs about the laser treatment, and a link to a new website, takeoutthepause.co.uk (screen shots in Figure 1a and 1b).

Figure 1a. Jane Lewis’ article, “Vaginal dryness – The last menopause taboo,” part one at 25 July 2017

Figure 1b. Jane Lewis’ article, “Vaginal dryness – The last menopause taboo,” part two at 25 July 2017

In her introduction, though,Dr Newson didn’t declare a relevant financial interest. She simply said: “Jane Lewis has written this article to share her experience and help to empower women and break this taboo. I am so grateful to her for allowing me to share this on my website.”

Yet Dr Newson wasworking with MLT, raising awareness of vaginal dryness and promoting the company. Website takeoutthepause.co.uk, where sheappears, is part of a PR campaign for MLT organised by ROAD Communications(screen shot in Figure 2). As you can see, ROAD put Dr Newson at the heart of thecampaign.

After I emailed Dr Newson on 26 July 2017 to ask why she hadn’t declared her role with MLT when publishing Ms Lewis’ article, the menopause expert added a two-sentence comment at the foot of the article: “This is an independent review and the opinion of Jane Lewis. I have previously been reimbursed to provide advice on general menopause issues with regards to MonaLisa Touch (takeoutthepause.co.uk).” (screen shot in Figure 4).

In the same email on 1 August 2017, Dr Newson also brought to my attention the file on her website containing her declaration of interests: link on the “About Louise” page. Yet the file creation date reveals it was only created that day –1 August 2017 (screen shot in Figure 5). In other words, after I’d first contacted her. The full filename, too, shows it was published in August 2017 (screen shot in Figure 6).

Figure 5. Declaration of interests: file created on 1 August 2017

Figure 6. Declaration of interests: full filename reveals publication in August 2017

Following our email correspondence, Dr Newson arranged for a statement to be added to the MLT website, takeoutthepause.co.uk (screen shot in Figure 7). It wasn’t there originally(screen shot in Figure 8).

On 28 June 2017, Dr Newson published an article, “The A-Z Of Menopause,” on the Female First website, which clearly identifies her as “ambassador” for MLT (screen shot in Figure 9). Disclosure of interest, rightly, then. Yet no disclosure in another of her articles, in dluxe Magazine dated 11 August 2017, “5 Steps to Take the Pause out of Menopause,” where author Dr Newsonrefers to vaginal dryness, names MLT and liststakeoutthepause.co.uk(screen shots in Figure 10a and 10b). The headline of the article, of course, echoes the MLT website, too.

Figure 10a. Dr Newson’s article, “5 Steps to Take the Pause out of Menopause,” published on 11 August 2017 – part one

Figure 10b. Dr Newson’s article, “5 Steps to Take the Pause out of Menopause,” published on 11 August 2017 – part two

Dr Newson is on the board of the grandly titled Primary Care Women’s Health Forum (PCWHF), an organisation that falsely claimed to be a charity (see 17 July 2017 post).She’s lead for the West Midlands. PCWHF is “dedicated to the education and support of healthcare professionals across the UK caring for female patients,” says its website. On 21 July 2017, it published document “Guidance on Diagnosis and Management of Urogenital atrophy or Genitourinary Syndrome of the Menopause (GSM)”: GSM-Guideline. Dr Newson and Dr Carrie Sadler wrote the guidance on behalf of PCWHF. As the overview explains, theyuse GSM as a more accurate term for menopause-related vaginal dryness. Although the authors fail to declare explicitly any relevant financial interests, the document carries five – yes, five – different brand logos, including pharmaceutical company Pfizer. MLT, though, isn’t one of them. Yet here Dr Newson was again raising awareness of vaginal dryness – while the medical face of MLT‘s PR campaign to do the same. Further, the guidance describes laser treatment, which “has been shown to lead to impressive results in some studies.” While MLT isn’t named in the document, the list of references includes a single study of laser treatment – one using MLT.It’s surely remiss of Dr Newson not to disclose her link to the company. Insummer 2017, I complained twice to PCWHF via email about her failure in the guidance to disclose her commercial relationship with MLT. I didn’t receive a response either time. Nor did I hear from Dr Newson when I raised the omission in an email.

Now to Dr Newson‘s work with Mylan, the major HRT manufacturer.On 17 July 2017, I exclusively revealed that the manager of the HRT portfolio at Mylan UK is a trustee of The Daisy Network, a charity providing “support, information and networking opportunities” to women with premature menopause (registered charity number: 1077930). For several reasons, I was concerned the charity is a front organisation for the pharmaceutical company.The Sunday Times newspaper reported my findings on 30 July 2017.

It’s clear Dr Newson works with Mylan as she sometimes declares her relevant financial interest. Butsometimesshe doesn’t – and that’s the problem.

For further information, Mylan on the back of each leaflet points readers to severalwebsites, including Dr Newson‘s. There both state: “Please note: Mylan has had no involvement in any of the websites listed above.” This is self-evidently false – because in both cases the drug firm’s list of recommended “independent” websitesincludes, er,The Daisy Network!

On 13 September 2017, meanwhile, Dr Newson spoke at a women’s health seminar for GPs, in London, organised by Pulse Learning Seminars – title of her talk: “Early Menopause: Do we need to treat it?”She was “supported by” Mylan, according to the day’s programme (screen shot in Figure 11). Two examples, then, the leaflets and the seminar, where Dr Newson declares her commercial relationship with the drug firm.

Yet occasionally she doesn’t.Particularly concerning are some of her promotional activities for a new menopause website forthe public, Menopause and Me: www.menopauseandme.co.uk. Sound familiar? Yes, Mylan created the site.

On 2 July 2017, Dr Newson was quoted in a very troubling article innational Sunday newspaper, The People, “It’s time to change the face of our final taboo.” Here’s the online version: http://www.mirror.co.uk/news/uk-news/final-female-health-taboo-set-10720595. (Trinity Mirror publishes The People.)Author Caroline Jones describes “new advice website Menopause & Me,” which is “designed to help women make more informed choices when it comes to managing their symptoms.” “Dr Newson is a wholehearted supporter of all such efforts,” writes Jones about the site. Yet neither the GP in her quotes nor the author disclose the fact that Mylan is behind the site. There’s no mention of Dr Newson’s commercial relationship with the drug firm, either. It‘d be laughable if it wasn‘t so serious.

At date of publication Dr Newson hasn’t responded to requests for comment via email about The People article.

On 30 August 2017, Dr Newson was quoted in an article on the NetDoctor website, “5 unexpected symptoms of the menopause every woman needs to know about”(screen shots in Figure 12a and 12b). As you can see, there’s a plug for Mylan‘s new siteat the end of the article: “Dr Louise Newson has been working with Menopause & Me – a new website dedicated to supporting women throughout their menopause journeys.” At least this article discloses a relationship, if ill-defined, between Dr Newson and the site. But the fact that Mylan is responsible for Menopause and Meis omitted – as is the GP’s commercial relationship with the drug firm.

Figure 12a. NetDoctor website article, “5 unexpected symptoms of the menopause every woman needs to know about,” published on 30 August 2017 – part one

Figure 12b. NetDoctor website article, “5 unexpected symptoms of the menopause every woman needs to know about,” published on 30 August 2017 – part two

A day before the NetDoctor article, author of The People one, Caroline Jones, again quoted Dr Newson at length, this time in the Daily Mirror newspaper (“Your guide to beating perimenopause blues”): Daily Mirror 29 Aug 2017. Although not plugging Menopause and Me this occasion, the GP reassures women on the safety and effectiveness of HRT – but again fails to declare any relevant financial interests. To treat vaginal dryness, meanwhile, the article advises use of a “good” vaginal moisturiser, naming a particular brand – Sylk. Sylk‘s logo is one of the five in Dr Newson and Dr Sadler‘s GSM guidance for the PCWHF.

Dr Newson underminesboth her and PCWHF‘s credibility by being paid to promotemenopause-related products and services. What’s worse, she doesn’t always declare relevant financial interest(s). The egregious articles in The People and on NetDoctor deserve scrutiny for another reason: Mylan is the company involved.

Mylan is unusualin the UK pharmaceutical industry because it isn’t a full member of trade association The Association of the British Pharmaceutical Industry (ABPI). ABPI members, for example,submit financial data to its Disclosure UK database: http://www.disclosureuk.org.uk.Non-member Mylan’s payments to Dr Newson and other healthcare professionals, and healthcare organisations are therefore hidden.

Further, Mylanhas a demonstrable track recordin the UK of questionable practices in both its marketing of HRT to the public and its closeness to the menopause charities (see 17 July 2017 post).To that list can be addeddishonest promotion of its new Menopause and Me website via editorial articles in newspapers and on websites. Dishonest because the editorial content hides the fact that Mylan is behind Menopause and Me; and there Dr Newson endorses the site without disclosure of relevant financial interest.

On 22 August 2017, I revealed that regulator the Charity Commission was going to instruct charity The Lee And Bakirgian Family Trust (registered charity number: 1046940) to re-submit its latest accounts “in the correct format”. This was after earlier that month I’d brought to the commission’s attention the problem with the latest accounts, made up to 30 September 2016: they didn’t contain an independent examiner’s report to the charity trustees. Here are the deficient accounts, downloaded from the commission on 27 July 2017: 0001046940_AC_20160930_E_C. Well, the north west charity has duly re-submitted them – but there’s no record on the commission’s public register of charities that the accounts had to be re-submitted. The re-submission is hidden. The fact of re-submission is hidden in the new version of the accounts, too. Both are unsatisfactory. The charity’s records should surely be complete and transparent.

Lord Lee of Trafford (Lib Dem) is a celebrated private investor, who, among many other things, has for a long time written a column in the FT newspaper about investing. How ironic: former MP Lord Lee pores over company accounts and tells FT readers how to interpret them. Yet the latest accounts for his own charity – he’s a trustee – were inadequate, according to the regulator.

On 18 September 2017, the commission told me in an email Lord Lee’s charity had now re-submitted the accounts. Nevertheless at date of publication there’s no indication of the re-submission on the commission’s public register of charities. There the revised accounts, which aren’t identified as such, are erroneously shown as received by the commission on 28 April 2017 – the date when the original accounts were filed there. In other words, the regulator hides the re-submission.

It’d be less of a concern if the revised accounts themselves documented the fact of re-submission and why it was necessary. But they don’t.

So the latest accounts now include an independent examiner’s report to the charity trustees – which, although undated by the examiner, obviously helps to maintain public trust and confidence in Lord Lee’s charity. But neither the commission’s public register of charities nor the accounts themselves record the fact of re-submission and why it was necessary. So much for transparency and accountability.

When I brought to the commission’s attention the new problems, a staff member said in an email: “We are in the process of reviewing and updating the ‘search for a charity’ and register page, I have forwarded your comments to the relevant team for them to incorporate into their feedback for future versions.” I won’t hold my breath.